Hello Everybody!

[Marabi]

Hi,

I wanted to introduce myself. I have many symptoms and don't know what to do. (I'm not from English-speaking country, I hope my style or grammar won't annoy you too much!).

So I'm a woman after 30 and I'm almost house-bound. I don't have POTS according to my doc, but many other dysautonomic features and symptoms, yet it's difficult to get official diagnosis here, where I live.

Few years ago I've started to have symptoms (very ocasional presyncopes), which one year ago unfortunatelly increased. After minor surgery I've begun to have GI tract symptoms (reflux and IBS), and in the same time I've developed motion sickness , some very strange anxiety attacks (like sudden fight or flight response few times a day). Since then, Ive had different feeling of my body all the time. Like I was out of chemical balance or something, everything - weather changes, temperature, even short travel, bowel movements, exercises, sounds and smells - can make feel like something is going on with my whole body and I'm going to faint, I feel very weak at these moments and I have nuseas and dyspnea.

What's more, I have very strict, poor diet, because I have so many food intolerances. I always was sensitive to drugs, but now is much worse, Ive stopped even medications I've had for my illness. Because I was diagnosed with MCAD - urticaria pigmentosa - this year (earlier with PVC, IBS, CFS, psychosomatic illness). Yet these drugs only have helped for some symptoms and only a little.

I know there's a connection between MCAD and dysautonomia, but also it's linked with EDS, which I don't have (I have only few hypermobile joints on hands fingers), but it's present in my close family.

I don't want to think this illness has ruined my life and is still doing so. I'd rather think "it has turned it upside down".

If somebody has mild to moderate chronic symptoms all the time, and sometimes is more symptomatic, but always feel her body different, do you think it's possible to ever function normal again? Because I can not work outside home, I can't travel, I'm so sick of this sickness! I loved to paint, to dance, I totally loved hiking and trekking in mountains and woods, I loved to drink and eat with my friends on the city, I loved so much going outside. I'm more a country- and outdoor person. Yet I stuck in the apartment with loud neighbors, when sound is one of my biggest stress trigger. 

Do you think it's possible to feel better and have life again?

 

[Pistol]

@Marabi - yes, it is POSSIBLE to have a better quality of life, but you need to be seen and treated by an autonomic specialist. Here are some questions I have about your post: 

4 hours ago, Marabi said:

So I'm a woman after 30 and I'm almost house-bound. I don't have POTS according to my doc, but many other dysautonomic features and symptoms, yet it's difficult to get official diagnosis here, where I live.

Have you been diagnosed by someone knowledgeable about dysautonomia? Have you had all of the proper testing done? 

 

4 hours ago, Marabi said:

What's more, I have very strict, poor diet, because I have so many food intolerances.

Nutritional deficits such as Vit B12, Vit D3 and folic acid deficiencies can contribute to dysautonomia. 

 

4 hours ago, Marabi said:

Because I was diagnosed with MCAD - urticaria pigmentosa -

Are you taking the recommended medications for MCAS, such as H1 and H2 blockers? Have you seen an allergist?

 

4 hours ago, Marabi said:

Do you think it's possible to feel better and have life again?

Yes, it  is - with proper treatment.  Our website has a listing of dysautonomia experienced physicians all over the world under the physician tab - you may find someone close to you that you could see. Best of luck - don't give up!!!

[Marabi]

@Pistol,

Thank you so much for your answer, it seems there might be some hope out there.

To be honest, no, I haven't seen a knowledgeable specialist in the dysautonomia subject. Only a cardiologist, but she neither tested me nor advised any of the exams you've mentioned. The problem is I live in the area in Central EU, where it's hard to find any dysautonomia specialist near me. It's a vicious cycle, I have symptoms that stop me from travelling and seeing a specialist, yet the same specialist is needed to treat these symptoms!

Now I'm waiting on a list for neurological exams.

Quote

Are you taking the recommended medications for MCAS, such as H1 and H2 blockers? Have you seen an allergist?

 I've tried many meds, also cromolyn sodium and Prednisone. I was taking H1 blockers for few months. Unfortunatelly all meds I've tried I've had to stop due to side effects.

The same problem I've had with all kind of suplements, like calcium and vitamin C. But I'm still looking for something that works for me.